{"id":648894,"date":"2026-06-20T12:18:14","date_gmt":"2026-06-20T12:18:14","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/648894\/"},"modified":"2026-06-20T12:18:14","modified_gmt":"2026-06-20T12:18:14","slug":"back-on-his-feet-thousands-fund-israeli-boys-3-2m-degenerative-disease-treatment","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/648894\/","title":{"rendered":"Back on his feet: Thousands fund Israeli boy’s $3.2m degenerative disease treatment"},"content":{"rendered":"

Meitar Roz hopes to go skiing one day. Putting aside the scarcity of Israeli snow, it would not be an unrealistic dream for most sabra schoolboys. But for Meitar, the prospect has been virtually impossible.<\/p>\n

Five years ago, at the age of three\u00a0 and a half, Meitar was diagnosed with Duchenne muscular dystrophy (DMD), a progressive genetic disorder that causes muscles to gradually weaken and waste away.<\/p>\n

Neither Meitar\u2019s mother, Eliya, nor his father, Gadi, had ever heard of DMD, so when he was diagnosed, their \u201cworld collapsed.\u201d The degenerative disease has no cure and can severely limit quality of life and life expectancy.<\/p>\n

According to the Israeli Health Ministry, the condition is caused by a mutation in the dystrophin gene, which helps protect the muscles, and affects roughly 1 in 4,000 males. Usually appearing in early childhood, it decreases mobility in adolescence; most patients don\u2019t live past their 20s, but with treatment, some can live into their 40s.<\/p>\n

As Meitar\u2019s parents picked themselves up and began learning about DMD, they discovered a groundbreaking treatment in the United States. Delivered intravenously in a single shot, Elevidys has enabled some treated children to maintain motor function over several years, research shows.<\/p>\n

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If obtaining the treatment sounds straightforward, the reality is anything but. At $3.2 million (NIS 14 million) per dose, Elevidys is one of the most expensive drugs in the world.<\/p>\n

Securing the treatment would require a fight \u2014 something Meitar\u2019s father was not afraid of. A tech worker in his civilian life, Gadi has been serving with the IDF reserves almost continuously since the bloody Hamas-led invasion of October 7, 2023, leaving Eliya at home in Hadera with Meitar and his 11-year-old sister Liri. A lieutenant colonel in the Northern Command\u2019s 36th Division, Gadi has spent 18 months in Gaza over two tours of duty, six months in Lebanon and a shorter stint in Syria.<\/p>\n

\t\"\"<\/a>
\n\t\tMeitar Roz, center, with mother Eliya and father Gadi in an undated photo. (Courtesy of the Roz family)<\/p>\n

Gadi launched another battle, lobbying the Israeli government to add Elevidys to the sal trufot, or national medicine basket, which makes the treatment eligible for state funding. His campaign took on added urgency due to his fear of how his family would cope if something happened to him. Eliya cannot work due to head injuries she sustained in an accident during her military service.<\/p>\n

Conducting numerous interviews \u2014 often in uniform and from his military base \u2014 Gadi went on a media blitz, urging the government to fight for Meitar in return for his service to Israel. Ultimately, however, the request was rejected.<\/p>\n

Gadi and Eliya pursued legal action against the Health Ministry and their national insurance provider, but lost their final appeal in November.<\/p>\n

\t\"\"<\/a>
\n\t\tMeitar Roz visits the Western Wall in Jerusalem, in an undated photo. (Courtesy of the Roz family)<\/p>\n

That left only one option: crowdfunding. It was a daunting prospect because of the enormous amount they needed to raise and the short window in which to do it. The fight for government funding had taken over two years, during which time Meitar\u2019s condition had deteriorated, and he now found it harder and harder to climb the two flights of stairs to their apartment.<\/p>\n

\u201cThe aim was to raise NIS 14 million for this treatment, and we had very little time because the clock is ticking against Meitar,\u201d said Gadi.<\/p>\n

As they engaged advertising and media partners, they had to decide upon a \u201cnarrative,\u201d Gadi said. \u201cWould it be about a poor boy who needs help or about a strong boy who has a disease and wants to fight against all odds and get his medicine?\u201d<\/p>\n

They led the campaign with the simple phrase: \u201cMeitar wants to live.\u201d The couple poured their life savings into the treatment and exhausted their insurance funding. They then turned to friends, family, colleagues and IDF comrades to help raise funds, while even sister Liri encouraged donations by making videos and giving talks at her school.<\/p>\n

It was the kindness of loved ones and strangers alike that ultimately helped the campaign reach its target. In just one month, more than 42,000 people chipped in to help the family achieve their eye-watering target.<\/p>\n

A nation desperate for good news<\/p>\n

Eliya believes their story touched a nerve. \u201cWe\u2019re living through a time of war, and Gadi is a lieutenant colonel in the reserves \u2014 it\u2019s not a small role,\u201d she said.<\/p>\n

\t\"\"<\/a>
\n\t\tMeitar Roz rides the train in an undated photo. (Courtesy of the Roz family)<\/p>\n

\u201cHalf the interviews he did were while he was serving and in uniform. That was very important. He said: \u2018I\u2019m here for the nation, please help me.\u2019 I think it was special for people to give back to someone like Gadi who was in the reserves and asking for help in this way.\u201d<\/p>\n

People are \u201cthirsty\u201d for good news, she added. \u201cWe\u2019ve had hostages and people killed, and suddenly there\u2019s the possibility of some kind of happy ending.\u201d<\/p>\n

It was several months before Meitar was able to undergo the treatment, as he had to isolate beforehand to reduce the risk of infection. Then, on May 4, he finally received the infusion.<\/p>\n

The 24 hours following the treatment were \u201cvery, very hard,\u201d said Gadi, as Meitar developed a fever and experienced swelling and delirium. His condition stabilized and he was discharged two days later, though the family paid for him to spend an additional week recuperating in a private room in the hospital.<\/p>\n

Finally, he was allowed home, where he must remain for most of the summer, as he is on a high dose of steroids and must allow his immune system to recover. \u201cHe\u2019s in protective isolation,\u201d said Gadi.<\/p>\n

\t\"\"<\/a>
\n\t\tGadi Roz masks up to build a new Lego set with Meitar Roz in an undated photo. (Courtesy of the Roz family)<\/p>\n

Staying indoors during a long, hot summer will obviously be challenging, but Meitar is a \u201cgood kid\u201d who \u201cknows the end goal,\u201d he said.<\/p>\n

\u201cHe was never a boy who would run and play football,\u201d said Eliya, adding that Meitar likes to draw, play with Legos and play video games on his PlayStation.<\/p>\n

\u201cHe has the patience to build and concentrate on things that boys don\u2019t usually have, so because of that, the isolation is not as bad,\u201d Eliya said.<\/p>\n

Meitar is not the only one impacted.<\/p>\n

\u201cIt\u2019s hard for Liri,\u201d said Eliya. \u201cIt\u2019s not nice to say, but she feels it. We tell her she can go to friends, but they can\u2019t come here because we\u2019re protecting Meitar.\u201d<\/p>\n

Hopeful signs<\/p>\n

\t\"\"<\/a>
\n\t\tMeitar Roz, center right, with mother Eliya, sister Liri and father Gadi in an undated photo. (Courtesy of the Roz family)<\/p>\n

It is too soon to know how effective the treatment has been, but the signs are encouraging. The progression of Meitar\u2019s condition had left him unable to open a sliding door to their balcony.<\/p>\n

\u201cThis morning, a month after the treatment, he was able to do it again,\u201d Gadi said with a smile.<\/p>\n

There is an elevator in their apartment building, but each day, a masked Meitar climbs up and down the stairs with his family to walk their dog, Marshall.<\/p>\n

\u201cThe short walks we take are getting slightly longer,\u201d said Eliya. \u201cIt\u2019s like \u2018wow\u2019 for us.\u201d<\/p>\n

The couple bears no illusions: They know the treatment is not a cure. But if successful, it will make a huge difference.<\/p>\n

\u201cIf the next two months go smoothly without him getting any infection or complication, he\u2019ll be able to go out and be a normal kid, playing, running and doing everything,\u201d Gadi said.<\/p>\n

Time will tell. \u201cIf it works well, as we anticipate, then in the next few years, he will not deteriorate. It will hold the position. It buys him a lot of time,\u201d he said.<\/p>\n

\t\"\"<\/a>
\n\t\tMeitar Roz with a new Lego set in an undated photo. (Courtesy of the Roz family)<\/p>\n

That time, they hope, will allow science to progress.<\/p>\n

\u201cAs long as this treatment keeps his muscle tissue alive, then maybe in the future there\u2019ll be a better cure,\u201d Gadi said.<\/p>\n

Eliya puts it even more poignantly.<\/p>\n

\u201cMost children with Duchenne really start to need wheelchairs by the time they turn 13. Thanks to the treatment, he hopefully won\u2019t need a wheelchair as a bar mitzvah present,\u201d she said. \u201cThere\u2019s no way of knowing, but I\u2019m hoping he\u2019ll go up to make the blessing over the Torah on his own two feet.\u201d<\/p>\n

\t\"\"<\/a>
\n\t\tMeitar Roz kicks a soccer ball in an undated photo. (Courtesy of the Roz family)<\/p>\n

For now, Gadi is home with his family while Meitar recovers, but he\u2019s constantly aware that his unit remains in Lebanon, defending the country with their lives.<\/p>\n

\u201cI said to my deputy, \u2018Be strong and we\u2019ll speak after three months of this treatment,\u2019\u201d Gadi said. \u201cRight now I\u2019m at home.\u201d<\/p>\n

Though the last few years have been incredibly tough, the couple has been humbled by the experience.<\/p>\n

\u201cI believe Meitar made us all better people,\u201d said Gadi. \u201cWe are more connected to the community. Other people helped us, and we opened up to everybody, so I think that Meitar made everyone better people.\u201d<\/p>\n

As for Meitar\u2019s dream of skiing, Gadi explained that the inspiration came from a physiotherapy session during which virtual reality goggles transported Meitar to a ski slope.<\/p>\n

\u201cHe got very excited and said, \u2018I want to experience this in real life.\u2019 That\u2019s become his goal: to ski on his own two feet,\u201d he said. \u201cWe want to make his dream come true, so we hope we can take him in February when the ski season opens.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Meitar Roz hopes to go skiing one day. Putting aside the scarcity of Israeli snow, it would not…\n","protected":false},"author":2,"featured_media":648895,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[43],"tags":[7503,3371,2864,3370,12346,102,2960,28173,56,54,55],"class_list":["post-648894","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-children","tag-crowdfunding","tag-family","tag-fundraising","tag-genetic-diseases","tag-health","tag-healthcare","tag-medical-care","tag-uk","tag-united-kingdom","tag-unitedkingdom"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/648894","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=648894"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/648894\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/648895"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=648894"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=648894"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=648894"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}